Skip to main content

A New "Normal"

So, to update from yesterday. Ethan is still not drinking. He is still violently protesting the moment the bottle comes near him. But, he is continuing to eat, so we are very thankful for that.

Last night he at 4 oz. of green bean, pear and pea baby food at church and had another wet diaper before bedtime. He slept through the night and woke up this morning with a "good' wet and dirty diaper.

He refused the bottle again this morning but with much coaxing he did eat 4 oz of his pediatric drink which I thickened with rice cereal along with his meds/vitamins this morning in his high chair. Ethan doesn't particularly care for the high chair anymore, so this of course adds to the stress of meals.

We had another dirty diaper around 9:30am before we left for our Special Connections playgroup. When we got to our playgroup Ethan ate 4 oz. of strawberry applesauce and then played and played. I think he had a good time. I know I did. It was great! We had 5 mommies and our kiddos there! I am already looking forward to the next Special Connections in April and hoping that the good weather will allow for more of our friends to come. Being around other mommies that "get it" although all of our kids have different challenges and are at different stages, is just good for my heart.

After playgroup we headed to the doctor's office. We called this morning because we wanted Doctor Dan, Ethan's doctor to take a look at him. It was a great visit, Ethan weighed in at 23 lbs. 11 oz. and there were no signs of any kind of illness or dehydration. Doctor Dan told Ethan that he needs to drink from his bottle or from his straw cup. We'll see if Ethan will listen to the doctor any more than he will me. LOL

While it is not ideal, Doctor Dan told us to just keep doing what we're doing and keep him hydrated as much as possible and to call if we stop getting at least 5 wet diapers a day.

This afternoon Ethan had 2 oz. of his pediatric drink thickened with 2 oz. of peach soy yogurt and then 2 oz. of applesauce with 1 oz. of pedialyte added to it. He also had another wet diaper.

So, while I am frustrated that at least for the moment Ethan isn't drinking, we are able to still get the fluid and calories that he needs into him. So we will continuing spooning in the fluids and reintroducing the bottle and working on acceptance of a straw cup, etc. I'm not sure I really like this new "normal" but I think that I feel better knowing now that we can keep him hydrated this way if we need to.

Thank you for your continued thoughts and prayers.

Comments

  1. It sounds like Mr. Ethan is setting his ways. You are being a great Mommy and I know it takes lots of patience. At least he is getting some substance and fluids. I'm glad he had a good doctor's visit, that has to ease your mind just a bit. Good luck and we'll be praying for you. :)

    ReplyDelete

Post a Comment

Popular posts from this blog

"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall  it is our hope that in the end that we will bring glory and honor to the Lord.  God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders. Here are just a few of the faces of PBD. 

Here we go again!

Yesterday, our family got to take another trip to the ER. Just a little after 7am, after I had fed Ethan breakfast and gave him his morning medications, he and I came into the living room to play before we had to get ready to leave for school. Ethan had 5 seizures, each lasting 10 to 15 seconds, back to back. Jeff had not yet left for work so I had him get the Diazepam, Ethan's rescue medication, and we gave it to him. The Diazepam is supposed to stop the cluster seizures, but it didn't. The seizures continued and didn't show any signs of stopping so the three of us packed up and headed off to the ER. By the time we arrived at the ER the drowsiness that is a side effect of the Diazepam was very evident, and although Ethan wasn't sleeping, he was definitely out of it. He had another small seizure shortly after we got to the hospital while we were being checked in. Once again his vitals were monitored and blood taken. The doctor spoke on the phone with our neurologist...